Shapes and Colors

Joe and I had such a wonderful evening. When I arrived home Charlie and Joe were heading our for a walk. Charlie started on his usual path connecting all the manholes in the neighborhood. It makes me so nervous because of the way everyone drives around here. M&M (aka Mrs Myers) had said it appeared that Charlie was rounding the bases. This gave me an idea to cut shapes in some neon printer paper that has been sitting in the spare bedroom closet for years without purpose. It was an amazing success. Charlie walked along the sidewalks of our neighborhood stomping the different shapes. As a working mom I often feel like I am just an observer in Charlie's therapy, the one who schedules the appointments and pays the bill. Tonight I feel amazing knowing that I was able to create a fun environment for my little boy to work through his disability. It is the little moments that mean so much.

Cerebral Palsy, Our New Challenge

If you've been keeping up with Charlie's progress, you may know that he's fallen behind on physical milestones. Typically, a 20-month old child is running around and talking with some proficiency. Charlie has required some extra help so far, and his recent MRI confirmed that he has a mild case of Cerebral Palsy.

What are we dealing with here?

Cerebral Palsy is a sort of catchall phrase for a spectrum of neurological and neuromuscular conditions. What does that mean? Well, let's start at the beginning. Charlie was born prematurely at 31 weeks via emergency c-section. He suffered a small right side brain bleed, causing some damage to the white matter of his brain, the connective tissue between nerves. As a result he has developed hypertonia (increased muscle tone) in his back, legs, ankles and feet. This causes his back to arch and allows him much less flexibility. It also manifests as an asymmetrical pronation in his feet. He stands up on his toes, while his left foot lies unnaturally and shows less stability and control than his right.

Good news

The good news is that Charlie's case is considered very mild by all accounts. In the limited time we've had to absorb this news, we've seen kids who face much greater challenges than our little guy will. We actually consider ourselves quite lucky in that sense.

It's also important to note that his disability is NOT progressive, which means it will not get worse. In fact, we've been assured by his many specialists that he will learn to work with and around this disability. He may never be an olympic sprinter, but he could potentially still enjoy skiing or biking if he wants to. His fine motor skills do not appear to be as affected as his gross motor skills. And while he still has to complete a speech therapy screening, Charlie does seem to be intelligent, creative, sweet, and very charming.

More good news

Charlie is getting more outside help than I ever realized was available. Sometimes it seems like his life is rigidly scheduled between doctors, specialists, therapists, daycare, swim lessons, etc. But what it means is that there are many people who care about his wellbeing and are invested in his progress. Currently, he sees a physical therapist, an occupational therapist, a speech therapist, a pediatrician, a neurologist, an orthopedist, an orthotist, a chiropractor, an ENT, and has also been treated for 3 cases of Croup, a couple ear infections, and god knows what else. And did I mention he spent his first month of life in the NICU at Saint Marks?

Charlie has recently had a pair of plastic braces custom made for his feet and ankles to correct his pronation and tiptoed stance. They're lightweight and relatively unobtrusive. We're so lucky to live in an era of advanced technology and specialized research. After only a month in his braces, Charlie has shown significant improvements in his stance and stability.

Recently Charlie was accepted by Shriner's Children's Hospital, which is a wonderful place with a wealth of resources for kids with neurological disorders. And since Shriner's operates largely with the benefit of philanthropic donations, they address the proper care BEFORE they address payment. This has taken a huge burden off of our shoulders and we're so grateful for their help. I encourage you to learn more about Shriner's and consider making a donation if you're ever able.

Another treatment we're considering is called hippotherapy, where children with neuromuscular difficulty ride horses to encourage stability, core strength, balance, posture, muscle tone, and emotional development. We're fortunate to live near Park City's National Ability Center, which offers this service. And while it's not covered by insurance, we're happily saving up to string together a series of visits.

How are we doing, you ask?

Remarkably, Charlie has handled all of this with grace and resilience. He's a happy little boy and he inspires us to work even harder to keep that smile on his face. Often when I feel tired or inadequate, I'm able to draw strength from him. For example, when suffering through a recent workout I thought: "Sure I could run 2 miles instead of 3, but what would Charlie say?" I've learned that giving up on myself means giving up on him. And that's not something I could ever do.

We've been told it's natural to feel anger or a sense of loss when your child is diagnosed with a disability. And I'll admit we've been through the ringer, feeling frustration and exhaustion. But grief would be an exercise in self-indulgence we can't afford. Charlie is such a gift, we're just grateful to have him. He enriches our lives every day.

It's also important to note that Charlie doesn't need our sympathy. What he needs is toughness. He will have to be tough to live the life he deserves: one of possibility and hope; and without excuses or self-pity. So for that, we'll have to learn to be tough.

We'd like to thank our families for their support. Sarah's parents have been amazing. They help out with daytime care, offering at least a day a week so we can get work done and enjoy an occasional day alone. And my family has also shown great support from New Hampshire, checking in and offering words of encouragement. Charlie is surrounded by love and for that, he's the luckiest guy I know.

My Big Little Man

I can not believe that one year ago (give or take a day) I was woken up by a strange feeling. Little did I know in those wee hours of the morning that my life was about to change so drastically. You have proven to be the most amazing life lesson. I no longer expect things to go as planned. Life is truly about the journey. I have an amazing family who support me and make me a better person/wife/mother/daughter.

Happy Birthday My Little Man. You are my world. And Daddy and I wish you a life filled with joy and kindness.

Charlie Update

Charlie is on the brink of his 8 month birthday. He has been sleeping through the night for almost a month now and he even is so kind as to sleep in on some weekends. This weekend he cut his first tooth. It was a big surprise to Joe and I since he has not been particularly fussy lately. He is eating solid foods 2-3 times a day. I am making all of his foods which gives me such a sense of pride. As a working parent I find joy in the little things I can do for him. His favorite food right now is bananas; he smacks his lips when he eats them. He even likes to pretend to feed himself which is just a fancy way of spreading banana all over his seat and kitchen.

Now that he is close to the 18 lbs mark we have been taking him hiking in the hiking backpack. It is so much fun to get outside and experience with world with him. It really seems to like the outdoors and is happy just to sit back and take it all in. Overall, he is such a happy baby; Joe and I are so lucky. I can just sit and stare at him for hours. Even after he has fallen asleep I hold him and take it all in. I am so grateful that he is healthy and happy. He has changed my life.

Bike MS: Harmons Best Dam Bike Ride 2010!

Joe and I just registered for a two-day 150 mile bike ride to benefit MS. I am so excited to finally commit to this ride and also to have Joe as a team mate. I have wanted to participate in the ride on The Canyons Team for the past 3 years but couldn't make myself commit mostly because I hate fundraising, it always feels like I am asking people to give ME money.

This year turned out the be The Year for numerous reasons. First and foremost Anastasia's shocking diagnosis this fall at the age of 27. Second, needing to get motivated to get in shape. The ride is in late June here in Utah so Joe and I have plenty of time to get our butts into shape. My mom has graciously agreed to watch Charlie while Joe and I punish ourselves by riding 75 miles each day.

Hanging with the grandparents.

We are fast approaching Charlie's four-month birthday. He is growing so fast. Last week he got to spend some quality time with my dad, grandpa and my mom, Umi.

Taking a nap with Grandpa

Umi and the Bandit

Roxie being a good sport.

Cross-Country Skiing

Yesterday Joe, Charlie, the dogs and I went cross-country skiing at Round Valley, a network of groomed trails in Park City. It was the first time we had taken the Chariot out with the ski attachment. Joe and I took turns pulling Charlie along. We went for about 2.5 hours and didn't hear a peep from the little man except the faint sound of snoring. He slept through the whole adventure and ride home.

A Very Charlie Christmas to All

Well Charlie finally turned ZERO the other day. After two months out in the world, Charlie’s due date came and went so he has shed his “preemie” label. He is now over two months old although by conventional standards, the clock starts now. So his “adjusted age” is now zero.

Having him home has been wonderful, albeit challenging. Sarah has already begun transitioning back to work part time and we’ve both begun feigning a sense of normalcy. We’ve been able to go skiing a couple times and Sarah’s even hitting the gym regularly.

Charlie is starting to become more responsive and despite the occasional meltdown, is still pretty agreeable. He loves tummy time and really keeps us honest when it comes to his feeding schedule, which is still every 3 hours. At his last “Charliatrician” appointment two weeks ago, he weighed in at 7 pounds 12 ounces. He’s been seeing his “Charliepractor” each week as well for adjustments, reflux treatment and cranial massage and shaping. As we speak, he’s quietly napping in his living room pack’n play. So it’s nice of him to respect my work schedule.

So while we have so much to be grateful for this Christmas, we’d like to extend our best wishes to you and your family. We hope your holidays are happy, healthy and full of love. Merry Christmas, Happy Hanukkah, Happy Solstice, Happy New Year, etc.


Charlie’s Holiday Wish to you.


LET ME TELL YA SOMETHING!!!... MERRY CHRISTMAS.


OK enough already.


Wow this is a big world.


Out for a walk.


Tummy time with Mommy.

Charlie’s Rookie Card

Well, we finally put out a birth announcement of sorts. Check out Charlie’s Rookie Card!


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Charlie-Man-Tastic

After about 10 days at home with Charlie, we're settling into a routine. Sort of. Charlie eats every three hours which doesn't leave room for much else. Once we've paced him, burped him, changed him, calmed him down, convinced him to sleep and successfully put him down...we're already 5 minutes late for his next feeding.

But we're still having a good time. The dogs are still enamored with him and hang on his every move. He's had a little bit of a sniffle but I think that's starting to go away. And he gets a little bit of heartburn but he's taking Prevacid for that. He's very sweet and as you can see by the pictures below, he really likes to show off his sexy side.


Charlie's lost in thought, a pensive preemie.


Eat your heart out, ladies....Yeah, you wish.


Step right up. Here's a free ticket to the GUN SHOW!!


No more pictures please. I'm spent.

Our First Thanksgiving

Yesterday, we celebrated Charlie's first Thanksgiving. My parents came to the house and cooked an amazing dinner for all of us. We all took a walk around the block while the turkey was cooking, this was Charlie's first walk outside. While pushing him all bundled up around the block I began to daydream of all the fun outings we have planned; visiting Yellowstone and the Scanlons, meeting his Great Uncle Rod in the San Rafael Swell, eating handfuls of sand and tide pooling in Kennebunk, visiting Portsmouth with his cousins Jim and Brody and Nichole or simply walking on the back roads and talking to the cows behind our house. I look forward to experiencing the world with Joe and our son.

The first few days at home were very stressful, I was so afraid that Charlie would suddenly stop breathing. Since then my confidence as a parent has increased tenfold and I feel worthy of being this little man's mother. Joe and I are tackling the 3 hour feeding schedule while I finish out my maternity leave and Joe graciously works from home. I cannot imagine how anyone survives being a parent alone. I am extremely lucky to have a supportive husband to tackle the stressful first few weeks.

Home. Safe. Finally. First couple days alone.

Charlie-Man (AKA King Charlemagne) is finally home, discovering new challenges and new adventures. We brought Charlie home on Wednesday night and introduced him to his new world. He breathed fresh air for the first time; he rode in a car; he saw his house; he met his dogs... all for the first time. Then, as if on queue, the daunting reality set in that we’re alone with this little man. No monitors. No nurses. No safety net at all. That first night was intense. But we made it through, like all new parents do.

As expected, the dogs immediately fell in love with him. He’s like a human squeaky toy. Roxie has been predictably standoffish. She’s curious, but she’s gonna wait for him to approach her like everyone else. we’re not sure if she realizes how long that might take. Blü on the other hand is OBSESSED with him. She’s done nothing but follow Charlie around since the moment we came home, desperately hoping to catch a whiff, a touch or a lick of him. She holds a stalker-like vigil outside his bassinet and climbs the walls when he cries. When we take Charlie across the hall to feed and change him, Blü dances around outside the baby-gate we placed in the doorway. But I think it’s clear they will soon be best friends.

Sarah and I are adjusting to parental life. Coping with the constant worry and the lack of sleep is inherently taxing. Charlie eats every 3 hours (on the dot) and has no tolerance for excuses. But most of the time, he’ll accept a little cuddling, or story time, or tummy time afterwords. And these quiet moments are worth a lifetime of sleepless nights.

I’ve joked about my wife being in love with “another man”. The truth of the matter is that we both are. He’s quite an incredible little guy. He’s fairly easy to please and he adapts well. He tries not to cry too much and he graciously accepts our faults. We can’t wait to see what comes next.


Love at first site... Blü hasn’t left Charlie’s side since he came home.


Charlie’s first bath at home.


Blü wants to help so desperately.


Story time! Charlie loves the sound of Mommy’s voice.


Tummy Time for Charlie.


Shhh... Just enjoy the quiet, little man.


Milk-Drunk.


Squishy face = Squishy pants.


WOAH, that was a big poop.


Ready for bed in a big way.

JAIL BREAK!!

That’s right. Charlie was discharged on Wednesday from Saint Mark’s Hospital after 31 days in the Newborn Intensive Care Unit. We were nervous about taking him home as we had grown quite accustomed to the amazing care he received there. But we were also very excited about starting our lives together, a little stronger for the experience.

Charlie’s vital signs were good and he met all his benchmarks, leading his doctors to conclude it was time for his parole. So on Wednesday, we drove down to Saint Mark’s as visitors for the last time. We gave him his 5 o’clock feeding and went over his discharge forms with the doctor and nurses. And with that, they removed his monitor wires, and helped us to our car with our new package.

The drive home was nothing short of terrifying. I took the wheel, while Sarah stayed in the back with our precious cargo. The hectic driving experience we have become so accustomed to over the years suddenly seemed insane. Typical Utah drivers minding their own business, suddenly seemed like homicidal psychopaths. But at an a-typically slow speed, we made our way home, avoiding any major conflict. When we entered the house as a family, I turned off the outside light — the light that had remained on for Charlie — for the first time since October 18th.

Safely pulling into our driveway with my beautiful bride and perfect son was a sweet, sweet victory. I feel like the luckiest man alive to have them both in my life. I am grateful for family and friends who have stayed close throughout this time, and I’m overwhelmed with more joy than my heart can hold.


Dreamie Premie, ready to go home.


GOT YOUR NOSE!!


Sarah telling Charlie all the great things he has waiting for him at home.


Pensive Premie.


DISCHARGE DAY!!


Charlie's having his monitor wires removed for good.


Charlie in his car seat with his prison stripes, breaking out of the hospital


Finally Home. Wednesday night, we turned off the front light for the first time since October 18th.

Week Five: Getting Closer...

Charlie-man is doing incredibly well these days. He has completed 4 full weeks in the NICU and is hitting all of his benchmarks. Now at 5 pounds 12 ounces (he was born at 4lb. 2oz), he’s breathing well, his temperature is great, and he’s now eating 100% by mouth. So the nurses have removed his feeding tube, which means you’ll soon be seeing pictures of him without tape or tubes on his face. He was also moved up to a less critical room in the Special Care wing of the main Nursery, which means that even the doctors are happy with his progress.

Charlie has also already passed his car seat test. This is a major hurdle for many preemies, and it must be completed before they can be discharged. He was required to sit in his car seat for two hours without any severe dips in his oxygen levels. So having passed that major milestone he’s that much closer to coming home. We’re cautiously optimistic, but we hope to have him home very soon.

Each day is a new adventure with this little man. He loves to blow our minds with his new tricks and his zen-like handle over his surroundings. He’s an amazing little guy. He refuses to get worked up over small details and he already shows an intense focus on his tasks. We’re so incredibly proud of him and can’t wait to have him all to ourselves.


During a diaper change, Charlie used his hands to distract us while he proceeded to pee all over the place.


Weee Are the Champions...



Mama and Charlie, havin' some snuggle time.


Charlie and Daddy spend some quality time

New Kind of Love

I just got home from going down with Joe to feed Charlie his am feeding. When we entered the NICU we were delighted to see that Charlie was enjoying his new digs, that's right he is now in a bassinet. This also means that he is wearing clothing...we will see how long that lasts at home...and is swaddled up in blankets. He was moved last night after 8 pm and his temperature 12 hours later was 98.8 which means he managed to maintain his body temperature all night long. HIGH FIVE BUDDY!

For the first time I was able to just walk in and pick up my baby boy. You have no idea how amazing that felt. He was wide awake and ready to eat. He is just like a little bird and opens his mouth as if he is saying "OK, ready to eat mommy." This simple act made my day and I can't image what it will be like to have him home and have the opportunity to see all his little quirks and mannerisms.

I have never known a love like this before. I grew up with amazing parents that showered me with unconditional love. I have amazing friends who I know are always there for me. And I have an amazing husband who I love with all my heart and who I look forward to growing old with. But the way I feel about Charlie blows my mind. I would do anything for him and when he looks at me I am complete. He is the most amazing thing that has ever happened to me. I feel so at peace when I hold him.

Charlie in his new bassinet.


"Confession: I'm in love with another man."


Charlie sucks ;)

Week Four

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Well, Charlie’s romance with the world grows stronger with every day. Yesterday we celebrated his three-week birthday. While our emotions continue to crest and trough with his daily battles, our sense of stability gains traction in light of his overall progress. We had an uplifting consultation with his doctors and nurses the other day, which gave us a great big picture perspective. The main takeaway was that his progress is solid, steady, and ahead of schedule. His weight is good. He’s now convincingly over 5 pounds and is developing a voracious appetite. While his energy level varies from one visit to the next, his strength and sucking reflexes are showing major improvement. Also improving is his ability to maintain a healthy oxygen saturation level while he eats. It may seem simple, but for premature babies the ability to suck, swallow and breath is a delicate balance that requires close and vigilant monitoring. And while I won’t say he’s a prodigy, Charlie is learning this important skill quickly. At his present rate, we anticipate that he may get to come home in as soon as two to three weeks.

I have to say, that given the circumstances we’re all doing quite well. We hear stories of children born earlier, smaller, or with greater challenges than Charlie. He’s making outstanding progress and he seems to enchant all who cross his path. His nurses constantly tell us how cute he is and delight in his easy-going, zen-like nature. Some have referred to him as their “boyfriend” which is at the same time cute and creepy, but oh well. He doesn’t seem to cry much. Instead, he greats the world every day with tranquil observance, a trend we all hope continues.

As of now, Sarah and I are making efforts to surface from these overwhelming events and to slowly re-acclimate into our personal and professional lives. While Charlie remains in the NICU, our hope to achieve a manageable, if temporary semblance of normalcy. Sarah’s handling the unusual transition beautifully and is being generously supported by her co-workers and boss. Of course, it will be difficult to bridge the timing gap between now and when Charlie comes home but we appreciate the flexibility and sensitivity they have shown. And as we make this hectic 90-mile round-trip commute to the hospital twice daily, we appreciate the patience and support of our friends and families.


Mommy and Charlie, snuggling up


Dr. and Mrs. Myers visiting from New Hampshire


Joe's dad holding Charlie


Joe's Mom telling Charlie all about everything


Sarah having some fun with Charlie


All four grandparents, neatly contained in one NICU window


Charlie likes to hold Daddy's finger


Charlie, pondering life.